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Posts posted by Goschi

  1. I got it too. It definitely has a very strong correlation with how strong my POTS-symptoms are in general.

    When I was at my worst in Feb/March this year, I got it from just sitting for 2-3 minutes. Now I don't get it from sitting at all, neither when I am walking or making other moves with my legs.

    The only posture I get it from now is standing still. It will start after 3-4 minutes and be in "full blow" after 6-7 minutes.

    However, as time goes by and I improve in general, it takes more time of standing still to appear.

    Therefore, I would say acrocyanosis for me is a perfect marker for how bad my POTS is. Anyway, no doc yet could give me a clear explanation of what it actually stands for physiologically...

  2. I went totally gluten free (my second try) about three months ago.

    This time, there was actually a coincidence with beginning to feel better in different physical ways. Not sure, whether this is really due to eating gluten free or just the usual waxing and waning of dysautonomia (?).

    However, it had no impact at all on my brain fog...

  3. Hi barb10,

    pain, stinging and all the vasomotor symptoms can of course be signs of small fiber neuropathy - but I don't think it is necesseraly so.

    POTS itsself can create all these problems, as far as I understood, even without any structural nerve damage being present.

    And yes, I always wonder what comes/came first... I will ask my geneticist if she personally has made experiences with patients having both EDS and SFN.

    Best wishes to you!!

  4. Thanks, Katybug!

    I definitely don't have hypermobile EDS, that's clear after yesterday's appointment.

    The doc just told me lots of signs on my body could stand for several EDS types and she just wants to see whether the genetic testing can add more pieces to the puzzle.

    (btw., she mentioned that her department recently saw a growing number of EDS patients, whose main symptoms seem to be myopathic).

    I have already started to read on ednf.org, but people there are not sure about a connection between EDS and SFN. (Thanks for the URL)

    As a first step, I just wanted to see how many of us in this forum have both conditions.

  5. I do have small fiber neuropathy, confirmed by two skin biopsies. Unfortunately it seems to be progredient.

    Up to now, no cause was found. After numerous tests, it seems as if nothing autoimmune goes on in my body.

    Yesterday, I was at a geneticist. She told my I may have EDS. She did lots of tests and draw blood for the genetic test. Now I have to wait...

    I forgot to ask her - is it possible that EDS causes the small fiber neuropathy?

    Anyone here got both? In that case there should be a possible connection, I guess.

    It would be more than a jackpot having those two rather rare diseases completely unrelated... (?)

  6. I seem to be a quite rate case, regarding the poll results. I actually never have (or had) proper chest pain.

    What I do sometimes feel is a kind of very specific chest "discomfort" (chest feeling too tight or not getting enough air) but this doesn't include any type of pain.

    The only parts of my body that really hurt (very often) are my (lower) legs.

  7. AllAboutPeace,

    thanks a lot for the link!! I have read the study some time ago, but forgot about the details mentioned.

    However - the stand test seems to be more reliable and what I did with my friends was of course a stand test (as I don't have a TTT-Equipment at my home! ;-)).

    Anyway, I should have tested all of them longer, 15 minutes of standing might not be enough...

    I am just wondering about myself now. Every of my oh so many stand tests lasted at maximum 15 minutes, all my 3 TTTs lasted for 20 minutes only. At any occasion clear POTS was the result.

    Should the tests have lasted longer? I always felt like dying after 5 minutes...

  8. Yes, I know - so the 9 cases I caught having the POTS-typical HR-rise may have "silent dysautonomia", or whatever(?).

    The idea of doing this "study" came to my mind, when a cardio told me a couple of months ago: "Well, now you have started having lots of dysautonomia-symptoms and we also caught your POTS. But who knows for how many years you may have already had POTS without knowing it?"

  9. Thanks for the detailed feedback to everyone!!

    Just to prevent a basic misunderstanding: I am absolutely sure that none of my tested friends has Dysautonomia! They simply lack every typical symptoms that goes along with this illness.

    I only talked about the question of POTS - which may (who knows?) be a rather widespread phenomenon even among people without dysautonomia(?).

    Just for 2 things, that were mentioned:

    - The pattern, that I found among the 9 "Potsies", i.e. slow and steady rise of HR after standing up is pretty much the same that I personally have. However, I have dysautonomia - my friends definitely don't...

    - My BP machine is the exactely the same that my POTS Neuro doc used, when he first dxd me with Pots with a Poor Man's Tilt Test 1 year ago. I bought this BP device in order to have comparable results. During my following hospital stays I could see that also many Hospitals use exactely this device, my POTS was confirmed numerous times with this device (and in addition with 3 TTTs).

  10. I think the question is whether their HR stabilized quickly after the spike. It is normal for all people to have a HR spike when going from supine to standing. Most recover to a normal rate within a minute of the spike.

    Katybug, that's exactely what was waiting and curious for! The "Pots-group" didn't have a short spike after standing up and then stabilizing - just the contrary, they all went up slowly but steadily while standing! Their highest rate was always in the last 1-2 minutes of the measurement.

    I would have liked to take longer measurements (f.e. 20 or 30 minutes) - but didn't want to overstress their patience. As there was a common attitude among all probands (also the non-Pots-group) that simply standing and not doing anything is very boring...

  11. If somebody is interested in the statistics of my sample:

    16 people, 11 female

    Age range from 21 to 63 years old. (Majority below 45).

    The 9 "Potsies":

    6 female, 3 male

    Youngest 27 (male), oldest 48 (female)

    Lowest HR rise I qualified as POTS was 27 in 15 minutes, highest 36.

    If you want more details, feel free to ask - I only promised my probands to stay anonymous as far as their names, but also facts like profession, marital status, etc. goes.

  12. After I came back home from hospital, I started with a small "research study", which I already wanted to do since a long time.

    I invited altogether 16 friends (no blood relatives!) to visit me, which they did on different days within the last 6 days.

    Before that I asked them if they would agree to do a Poor Man's Tilt Test at my home. All agreed before their visit.

    I did the test by myself. Everyone had to lay down for 30 minutes, I took BP and HR at the 10, 20 and 30 minute mark. After they stood up, I took BP and HR every minute for 15 minutes.

    And I knew it, I knew it - sometimes you have a feeling in your stomach: Out of those 16 people, not less than 9 (!!!) would meet the criteria for POTS by reaching a HR of 30 (or very close to 30) within 15 minutes of standing!!

    Needless to say, noone of them ever felt any symptoms, they only heard about the existence of POTS from me.

    Still don't really know what to do with the results of my "experiment". Up to now, I just wanted to know, whether the feeling in my stomach is right that a reasonable number of people would meet the criteria for POTS, if only they got tested.

    However, they don't get any of the symptoms we discuss so intensively on this forum...

  13. Wow, Gjensen, Congratulations!!!

    However - please don't get me wrong, I really don't want to make you feel insecure - just be careful not to overdo it!!

    I have made not so good experiences, when I tried to extend my walking range very quick from day to day this February/March.

    Listen to your body! - And everything will be fine!!

    Best wishes and good luck!!

  14. Yes, I have been checked for lyme and coinfections, everything came back normal.

    But that a positive IBZM-Spect indicates something autoimmune going on, is a pretty new perspective on this test - do you have any scientific articles on IBZM and autoimmunity? I was always told it's "only" about Parkinson's and related diseases...

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